Sunday, October 30, 2011

10/30/11

I wanted to update on how things have been with Cole since the Mommy/Cole meltdown.  It seems that we are back on track with life. He is signing for what he wants if its a sign he knows. He is still doing the open sign but not always at the right times. So we are still working on that with him. After speaking to Cole's EI ladies the frustration might have come out of the drama weekend we had. Mommy started a new job along with some family issues that finally erupted. So we think Cole's meltdown might have been the fact that he had no way of expressing how he felt during this time. So I am now working on keeping family issues away from Cole and reducing the stress. Until Cole can express himself they way he needs too with out meltdowns our house will be as stress free as I can make it. 

Tomorrow Cole goes for his eye appointment.  I just filled out the 3 pages of new patient paperwork in hopes that we wont have to be there 15 minutes earlier. I am curious to see how this appointment goes since we don;t do good sitting for long periods of time. He seems to sit well during EI but he is still fidgeting a little. I hope that this goes smoothly and it doesn't set Cole back any further with health care providers. After having his EEG done Cole prefers to not be around doctors or nurses and if they touch him he starts to cry. I am trying to help him get over this but its a slow process. I will try to post tomorrow about the process and maybe even get some pictures up too.

To everyone who lives in Toms River,NJ Have a happy and Safe Trick or treat day and for everyone else have a safe and Happy Halloween.

Wednesday, October 26, 2011

Mommy Meltdown

I started this post last night but due to Cole's and my meltdown I was unable to finish. I love Cole more then words could ever explain and feel like God put me on earth to be his mommy. With that being said last night was horrible. For probably the past 3 days it seems Cole has had a meltdown trying to communicate with me at night. He seems to be using the sign language open or just holding my hands to try and tell me something. I acknowledge him when he dopes this and I try to help figure it out. I don't know if this issue is from the changes we have had the last week or just another bump in the road of life.  after about a half hour of him trying to communicate he got upset which in turned made me upset. I know that this is a process in life but I don;t want to see my son upset because he can't tell me what he needs or wants.  My husband tried everything including changing him for bed in hopes that is what he wanted. Needless to say after and hour I decide we would lay down and see what happens. I spent another half hour with him crying and me too before the calm down happened. He was laying in bed next to me trying hold my hands while also trying to get comfortable. I don;t know why he needs to hold my hands while trying to go to bed lately. I think my crying had to do with not only the issue at hand but the future of Cole. It makes me said to think he could be nonverbal the rest of his life. It also makes me wonder what his future will be like and if he will do anything that my husband or I did as kids growing up.  Last night made me realize that I need to find a group gathering with other parents going through the same thing. I need hope and guidance for the future of Cole. Last night as I was laying in bed I wanted so much to call my grandma and say " Please tell me what to do to help Cole." I just wanted someone to say do this and everything would be fine. I didn't call her because I knew it would upset her too and that was the last thing we needed. I need to add the goal of finding a group meeting for autism soon. Maybe then I will have some comfort or maybe just less mommy meltdowns. Please tell me how you hand your mommy meltdowns and what triggers them?

Monday, October 24, 2011

Another proud moment/Doctors

After a long weekend, it was refreshing to see Cole has picked up a new skill.  Cole decided that he didn't want his socks off an was able to put one of his sock back on.  I knew that Cole could put on mommy and daddy's socks but struggled with his. I am hoping to try and get him to repeat this task but only time will tell if he will. Cole will pick what he wants to do.

Well I started the task of making all of Cole's appointments. So far he has a PT appointment for Nov., OT is not until March and I called to make his MRI but didn't hear back yet. I also called Cole's neurologist to get his script for his MRI changed a little.  His script is for and MRI with IV sedation and I would prefer oral sedation. Every since Cole's EEG he seems to cry every time he sees a doctor or nurse.  So I prefer to do the less invasive sedation. I hope that tomorrow the day stay unit calls me to get the appointment process started.  Well I don;t have much since I am still glowing from my proud moment....

Sunday, October 23, 2011

Goals for November and Recaps

So as October ends and a new month will begin I figured its a great time to make a to do list of upcoming things that need to get done and also make some goals for November. Since EI has entered our lives we have had 2 meetings regarding Cole and setting goal for him. I figured its time i start setting goals for myself even if its a goal to help Cole achieve his goals. So My goals for November are:
Try and make a poster board with Cole's day schedule maybe even get pictures up for him to see.
Start packing ( I have been looking at houses to rent and am hoping to find one by the end of the week)
Have Cole's MRI appointment and leave with a copy of the scans
Try to cut more coupons so that my food bill is lower
Manage my sleep better with my new job hours
Try to get Cole to sit in the tub or at least enjoy shower time
Not cry at Cole's EI meeting this month when we talk about school for him.
Try to budget 2 half days in daycare for Cole to build on social skills.
I think I will stick to these goals and hopefully I can get some of them done for November.

So the recap part of this is really updates on what has been happening with Cole.  He is now saying baby. I don't think he knows what it means but at least we have 2 words now. The bath is still a struggle. He likes to play standing up and is ok when you start to wash him but hates his hair being washed and wont sit in the tub. We bought a new shower head but Cole is not a fan of that either.  For EI Cole has gone up 2 points in 2 months from his last mini evaluation. As soon as I have a date for Cole's MRI i will post that and I will blog the day of it and hopefully have a picture to go with the blog.  Cole is on his strict diet that he has picked. It consist of chicken nuggets, cereal, hot dogs,scrambled eggs, chocolate milk and juice. Remember be thankful for the little things in life because they could add up to the big event.

Saturday, October 22, 2011

As the month comes to a close

Well October was here and will be gone in a blink of an eye as far as I am concerned. New changes have taken place in my house and it seems like we are playing catch with everything going on. I have yet to just take a breath of fresh air.  The new things are: Mommy is now working mommy, Cole said baby, EI is now in the am, Cole has an ophthalmology appointment and of course Halloween is coming

Lets start with I am now a working mommy. Although I loved being a stay at home mom and well if we could afford it that's what I would still be. I found a job that allows me to work overnights so I miss nothing with Cole during the day. Although it is only my second day the job is going good but my body is taking it bad it seems. After working a 10 hour shift I found it hard to nap at all before starting my 11 hour shift the next night. Since i can't sleep I am extremely tired and well its making my stomach upset too. I am sure in time as I adjusts will pass. My body needs time to adjust to the new hours.

Next Cole's EI are now all in the am. We have worked it to Cole only has EI 3 days a week but still has 4 sessions. He has a double session on Friday which I am hoping he adjust too. I wanted to try and start to give Cole a routine and possible me too. I feel like now we can set up play dates with friends and maybe do some activities at the library.  We have yet to get Cole on a bedtime schedule yet but I hope to try and start that soon too.

We also started looking into preschools or daycare. We need to find on that fitsCole's needs as well we as our wallet.  We did find a decent one so I am thinking as soon as we can get him in we will or maybe we will continue to look. I know that Cole needs social skills and to start preparing for when he goes to school but its so hard to let go.  I don;t know if its because he does have some special needs or just because its the mommy insecurity.  I guess time will only tell with this and I will blog about it.

Lets talk about the magical moment when we realized that Cole is now saying baby. Rob(my husband) and I thought we heard it but it was in with all of Cole's babble so it wasn't until today when he said it in EI that we knew he said baby. I am not sure if he know what a baby is or who he is calling baby but a word is a word and I will take the improvement.

Its that time again where Cole has his doctors appointments. This month we have ophthalmology to check the retinas in his eyes. This will help us get an idea if we have a problem with the brain. For anyone who doesn't read all of my blogs we are looking into White Matter Disease. Its most likely he doesn't have it but we need to take caution and still spend the time to investigate this.  I also have to make an appointment for Cole to have another MRI done. Hopefully this will be the last one we need done. I don;t want to have to sedate Cole again after this MRI. So hopefully November will bring the end of us wondering if Cole has White Matter Disease along with Autism.

The last topic was its Halloween this month. My child has decide to to not like any costume this year. Thankfully we are not really doing too much trick or treating. Its my best friend's daughter's birthday so we will actually be celebrating that on Halloween. So i bought Cole a shirt that says Future Prom King......Place votes with mommy. I figure I still have some years to actually get him to enjoy Halloween and trick or treating.

So how many people have had change in their life this month?  How many people are actually taking their kids trick or treating? If your child is dressing up what are they going to be?

Thursday, October 6, 2011

Lately I feel like I should be blogging more but not sure what topics to write on. Its been a long week at this household with a longer week to come. I would love to post helpful ideas for parents with special need children. I just don;t have much information to blog about. I've taken a break from all the autism books I have been reading and have just been focusing on what is going on in Cole's life.  So this is what is happening in our life:
Since the pacifier was taken away we have had numerous meltdowns during the day. It makes me miss the pacifier which I never thought I would say.  I know that it is gone for a good reason but miss the child who had less meltdowns. We have also ran into the problem of when Cole gets up from nap its right into meltdown mode. Unfortunately I have yet to find a way to help reduce any of these meltdowns. What i do know is that quiting the pacifier cold turkey was the best way for Cole. He still would take a pacifier if there was one around but we try to avoid him finding any. We are actually still locating the ones he has hidden in this apartment.
I start a new job next week and I am hoping that maybe in my training i will learn some new things about people with special needs. Maybe I will have a topic to blog about or helpful hints.
We are also looking into preschools/daycare for Cole. Although he wont need childcare since I will be working overnights I think its important that he have social interaction. I also think that it will help not only Cole but mommy get ready for when Cole goes to school when he turns 3. I dread the day he goes but know that its the best thing for him. I also don't want to lose services because I couldn't let go. With that being said I am looking for a daycare for 2 half days a week. This will help get him started and me to let go a little.  Hopefully I find one that will be a good fit for Cole and a good fit for my wallet.
We also will be making an appointment for Cole to hopefully have his last MRI in November. I am not looking forward to this but know that it could give me some peace when we get the results. I will blog about the process and also the results when we get closer.
That would be the end of the issues we are dealing with in this household. So i will continue to post on topics I have and hopefully it will be steady soon. I am also hoping to increase my followers. My goal of this post is and will always be a way to help other parents. I want to make sure I don;t lose sight of it and the people who do read this realize that they can ask me anything. So please feel free to comment or even email me.

Saturday, October 1, 2011

New Month

As we enter into a new month it seems life has new challenges. This month I will go from being a stay at home mom to a working mom, Cole has given up his pacifier and I plan to get Cole into more social activities. I know Cole misses his pacifier because he is chewing on his blanket now. I think he misses the fact that it helped him soothe himself. With the pacifier being gone we also have seen more meltdown. I am by far the wrong person to ask what to do about the meltdowns. So far I try to ignore them and if it goes for too long I will try to help him to understand what is going on. So I am opened to any other suggestions anyone has out there for meltdowns.

As far as social interacting for Cole I am hoping to be able to plan an activity a week for him.  My husband and I had a chance to look at a daycare today. I was originally thinking of putting Cole in one for 2 half days for social interaction. I want him to be prepared for when he actually goes to school at age 3 and also work on his social skills. I realized that even putting him in for the little bit of time might be hard to do. The price was more then we could afford so instead I started looking at local libraries. We have 3 in close range of us and the classes are normally free. So I plan to work around his EI so that we can now do that too.

Hopefully the last change will be me going back to work. I actually found a job that will hopefully not interrupt Cole's day. I will be working overnights so that I only miss Cole sleeping.  My goal was to be able to be as hands on with EI as I am now and also not miss any of Cole's first that he still has. New Jersey is a 2 income to live state so I knew this day would come soon. I wanted to school for a career that I would be able to work overnight. So I am hoping I can adjust to the knew schedule for Cole's sake.

I wanted to end with what most parents feel at one point or another. I spoke to a friend tonight and said i just wish Cole could talk. I wish when I went to the daycare that I didn't have to focus on if they could meet his special needs he has.  I also hate the fact that after leaving as much as they tried to make me comfortable that is there anyone I can trust to care for Cole. I know by age 3 Cole will be in the school district because EI ends at 3 but how do I know its right. So I started wondering will I trust someone with Cole , when will he really talk and communicate what he wants, how much longer do I have to wait? I wish there was a fast fix to this in life but I have yet to hear or find about one. So I am closing with the Serenity Prayer tonight:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.